Caring community lifts heavy burden from Sussex family

With 8-year-old son Aiden at her side, Dani Twigg lifts son Layne, 9, into the wheelchair-accessible van purchased through community support and a substantial anonymous donation.

FRANKFORD — A caring community and opportunity’s knock has lifted immense burden from the shoulders of a single mother of two whose oldest son has an extremely rare chromosome disorder.

In desperate need of a handicapped-accessible vehicle to accommodate her son Layne, who is confined to a wheelchair, an anonymous $7,000 donation granted Dani Twigg’s wish: a 1997 Dodge Ram 3500 with just 67,000 miles equipped with a motorized lift.

More than $2,100 in donations through a GoFundMe page will cover the title transfer, tax, tags and insurance for one full year.

Ms. Twigg resides between Frankford and Roxana with her sons, 8-year-old Aiden and 9-year-old Layne. The chromosome disorder Layne was born with “is so rare, there is no name for it – and he is actually the only one in the United States that has it.”

Layne currently has the capabilities of about a 6-month old infant, she said. He attends the Howard T. Ennis School in Georgetown,

“He is completely dependent on me. He can’t walk. He is non-verbal. And he has hip dysplasia. He has undergone four hip surgeries in the past six years,” Ms. Twigg.

As Layne has grown, so has the need for a wheelchair-accessible vehicle.

“As he has gotten older, it has gotten so much harder for me to transfer him,” said Ms. Twigg.

Until the lift-equipped van arrived June 23, a Tahoe was that mode of transportation. That meant lifting Layne in and out as well as his wheelchair, which itself weighs upward of 100 pounds.

“And I have bursitis,” said Ms. Twigg.

Two days before she got the van, she fell while carrying her son.

Layne got “some bumps and bruises,” she said.

Employed in private duty home health care, Ms. Twigg recently lost her fulltime patient, leaving her with two part-time patients. “So I work maybe two or three days a week. It’s hard for me to get a job through a company or an agency or anything like that because it has to be flexible,” Ms. Twigg said.

She tried her luck at winning a new handicapped accessible van in conjunction with a National Mobility Month contest in May, but didn’t win.

A close friend of the Twigg family, Chelsea Hudson, established a GoFundMe page in hopes of raising enough money to purchase a van.

As donations came in, word of Ms. Twigg’s need filtered down to Ocean City, Md. A connection was made with Eve Slocum, who no longer had any use for her wheelchair-accessible van with the passing of her son last year.

All that was needed was the money.

Then the anonymous donation arrived.

“Yes, there was a check for the entire $7,000 sent to my friend Chelsea Hudson, who started the GoFundMe page,” Ms. Twigg said. “I would like to thank the community – again – for all of their support through this adventure It makes our lives so much easier, much easier for Layne to take trips and much easier for me to go on doing the things I do for my community.”

Ms. Twigg is also pledging to spread the word and generate awareness for children with rare hereditary disorders.

“I am in the process of starting a non-profit organization called Layne’s League to help raise awareness for children with extremely chromosome disorders,” said Ms. Twigg. “We are very active with The Delaware Foundation For Reaching out to Disabled Children (DFRC) and the Delaware Blue-Gold.”

The slogan for Layne’s League is: Rare disorders: A whole new ballgame.”

Active in her community – she assisted as a coach in Little League for three years – and fundraising for numerous worthy causes for others, Ms. Twigg was a member of the Roxana Volunteer Fire Company as a firefighter/EMT (Emergency Medical Technician) from 2002 through 2010.

“I didn’t have time to meet the standards of an active member,” she said. “I had to give it up in order to properly care for Layne.”

Recently, Roxana VFC Station 90 recently came to the rescue of Ms. Twigg’s father, who recently underwent a series of foot surgeries and has been unable to work around his home.

“My dad was unable to do yard work by himself,” Ms. Twigg said.

Roxana Fire Chief Andy Johnson organized a surprise work detail. The work bee was staged Monday, June 22.

“There were probably about 20 guys out there,” said Ms. Twigg. “They had weed-whackers, they had lawnmowers and all kinds of stuff out there – trimming bushes and cutting the grass and trimming trees – things my dad has been unable to do …”

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